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What support is needed to self-manage a rheumatic disorder: a qualitative study
Janet M J Been-Dahmen1,2, Margot J Walter3, Jolanda Dwarswaard4
1Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rochussenstraat 198, P.O. Box 25035, 3001, HA, Rotterdam, The Netherlands. j.m.j.been-dahmen@hr.nl.
BMC Musculoskeletal Disorders
|February 18, 2017
Summary
Patients with rheumatic disorders need tailored support for self-management, emphasizing skill development and expert recognition. Professionals should coach problem-solving skills, acknowledging patients as experienced experts in living with their condition.
Area of Science:
- Rheumatology
- Patient Self-Management
- Healthcare Support Systems
Background:
- Rheumatic disorders impose significant burdens, necessitating active patient self-management.
- Optimizing self-management interventions requires understanding patient perspectives on support needs and preferences.
Purpose of the Study:
- To identify the support needs of outpatients with rheumatic disorders.
- To determine patient preferences for who should provide self-management support.
Main Methods:
- Qualitative study using focus groups and individual interviews with 20 outpatients.
- Directed Content Analysis of interview data using a model of support needs (instrumental, psychosocial, relational).
Main Results:
- Most patients desired an active self-management role but needed support in skill development.
- Support needs varied by disease stage, symptoms, and life changes.
- Trusted relationships and tailored support from professionals and relatives were crucial; few preferred peer support.
Conclusions:
- Self-management is primarily the patient's responsibility, with a desire to be recognized as experts.
- Professional support should focus on coaching problem-solving skills through practical tools and training.
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